A Holiday Week MS Chat With Trevis, Part I

Over the course of the next two or three posts, Life With MS Blog will take some time to answer questions which we called for earlier in the month. It may be difficult to fit them all in, but we’ll give it a shot!

I was diagnosed with multiple sclerosis in the spring of 2001, but like many of you, I experienced symptoms over a decade prior. Some of you have asked about my therapy course. I started on Betaseron for the first 18 months after Dx. During that time, I had six more discernible attacks (some of you have asked “how do you know when you are having a flair”? I’ll get to that…). For each of those attacks, I was put on 3-day courses of IV steroids — sometimes with oral taper sometimes without.

My MS was getting more aggressive, so my medical team and I decided to get aggressive as well. I stopped Betaseron and let it “wash out” for about 6 weeks (during which I realized how those “flu-like” symptoms had been beating me up for a year and a half!!! I felt better than I had in 18 months) in order to begin Novantrone.

This drug has a maximum lifetime dose and I have expended that amount. That drug has about 2 years of efficacy after completion and I’m about four years out now. I’m currently investigating what’s “next” as far as treatment options, but all of my options are very expensive with my insurance and I do not qualify for any of the pharmaceutical company patient assistance programs (trust me on this one; I’ve checked into ALL of them!)

I am currently seeking to get my MS “service connected” through the VA as my first MS symptoms occurred when I was in my last couple of years in the US Coast Guard.

Some of you have asked about my “non-medical” approach to MS…

I blush to admit that I haven’t much of one.

I eat very low on the food (processing) chain and grow much of my own vegetables and storables (50-odd lbs of potatoes, over 100 heads of garlic and even wheat last year, to name a few…). I try to sleep well and plan around my disease as much as possible.

I think that therapy (psychological) is the best investment — and you really have to work at it — that I’ve made in my lifestyle.

I exercise, but not enough. I give my MS its space in my life because, for me, the fighting isn’t worth it. I do what I can, when I can and I admit to myself when I cannot. Some will see this as some kind of surrender but it works for me.

Short answer is that I was asked by Rose — who is still my executive editor — if I’d like to write a blog about living with MS. I said, “Sure… What’s a ‘blog’?”

The rest is six years of history

A couple of you asked some questions about research. The idea that Cris posed about a database is unknown to me.

Mike wanted to know what current research I find most promising. The simple fact that researchers are looking into myelin repair is encouraging to me. Even if we “cured” MS today, many of us are living with significant disability. Also, the use of (several forms of) stem cells in intriguing and I’m happy to see more research into the progressive forms of MS as well.

There were so many questions about symptoms that I think we’ll look into a regular, scheduled blog to chat about the vast symptoms that many of you wrote about. Hope you don’t mind me putting that one off.

As to when you know you are having an attack, the general consensus is a new symptom (or the return of an old symptom as bad as or worse than previously experienced) which lasts longer than 24-48 hours. I, however, also know by the associated “profound fatigue” that couples with such an attack. It’s worse than my day-to-day MS fatigue and sometimes will even be a precursor to those new symptoms.

I’ve kind of run out of space for this post, but will continue until we get everything you asked for covered.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more